Friday, May 30, 2008

I spent a year of my life doing an independent study where I planned a disability awareness workshop for the students in my department. Why did I feel the need to do this? Here is a chunk from another post back in Jan:

"If you poll a bunch of family studies majors as to what their future career goals are, a popular answer is working with special needs children. Then poll a few family studies majors as to what the first thought is that comes to mind when they hear the word disability (as was done a year and a half ago). You get answers such as the elderly, people who cannot work, young children, and people in wheelchairs. My first thought to that? What the hell am I then? My department is small. We take classes with the same people over and over. Even if they don’t know my name, I would be willing to bet that 90% of family studies students know who I am. I’m hard to miss, being the token gimp and all. I am a 23-year-old college student in a very structured pre-professional university program, who just happens to have CP and bipolar disorder. I am neither elderly nor a young child. I do not work now, but I am a full time student and I volunteer 1-2 days a week. I will of course work after I have my degree. There is no reason why I should not be working. As to the wheelchair thing, I’m on the fence with that one. I happen to have 2 wheelchairs in my possession, but I don’t use them all that often.

"My second thought? I would not want any of you working with my (fictitious) disabled child. In fact it scared me half to death to think that people being trained in the human services are left to go out into the real world with no real knowledge of disability whatsoever. My classic example? Say you don’t want to work with the special needs population at all, say you want to work in crisis intervention. Say you work at a battered woman’s shelter and a woman comes in with her son who is autistic. What then?"

During that time I also took a class with possibly one on the most offensive textbooks I have ever seen. I don't have the book with me, so this is not an exact quote, but in the chapter that discusses understanding where both you and your client are comming from, there was a sentence to the efffect of, 'your client may be fat or thin, young or old, rich or poor, physically or mentally handicapped or whole' The part I bolded is a dirrect quote. I could never forget that. A friend of mine from home congratulated me on being part of a person. I spoke up. My department is changing the book for this fall.

This summer I'm taking adolescent psyc. The course started Tuesday. The first thing I did when I opened the book was flip to the index and look up disability. On the one page that anything is mentioned, it is insinuated that all PWDs are stupid. I even brought the book to my shrink today and had her read it. I wanted to know if I was being over sensitive. After putting it in context with what came before and after in the chapter, she agreed. Again, I don't have the book with me at the moment. I wish I did so I could quote it. The only place disability is mentioned in the book is in chapter on education. The focus was learning disabilities with a gigantic focus on ADD. What about everybody else? Do we not exist? Also, what really bothers me is that there is nothing mentioned about the socioemotional impact of disability during adolescence. I feel based on personal experiance and observation that the impact during this time in particular is incredibly signifigant Why aren't people learning this?

Apparently the first book I mentioned is rather groundbreaking. At least they tried (however unsuccessfully). We're mentioned continuously throughout that book as a distinct group. Not so in the adolescent psyc book. That focuses exclusively on culture (ie race/country of origion). Um, disability is a distinct culture too.

Then the other night after stewing on this for a couple of hours I remembered that my human sexuality book has a 2 or 3 paragraph mention about CP in the chapter discussing sexual disfunction. To the extent of my knoweldge, that's a blatent falicy. CP requires being creative when it comes to sex. So does spina bifida, SCI, and a host of other disabilities. Did I miss the memo that stated that creativity is the same thing as dysfunction? Because I thought they were completely different. I mentioned this to my shrink today as well? She asked me if it was true. I sid a real quick "no." It is so easy to cause damage. If you don't know any better...

I'm angry and I'm upset and I'm saddened about the whole thing. No wonder the students in my department have such a narrow misguided view of what disability is. Look at how they are being taught. I think any one of you would also be frightened at the thought that they are all going out into the world to help PWDs having this background.

What needs to be done (I think) is a 2 pronged approach. The first would focus on college students. Get to human services professionals, medical professionals, teachers, etc. before they go out in the field. To do this you absolutely have to target professors, which means getting a lot of research done. They like hard evidence. It's what they'll listen to. The other side of the coin is to focus on young children. Make it so that by the time they go out in the world this stuff is second nature. A no brainer. Like racism. People are always going to be racist, people are always going to be ableist, but look at the percent of people that are racist vs 40 years ago. What did it? I think a lot of it has to do with exposure. Most people don't have to learn not to be racist now, they just get it. Wouldn't that be nice if eventually we didn't have to do things like workshops? This would involve a lot of community outreach.

But why should anyone else try to do this if I won't even do it? So I do... It's the most important thing that I do. My hope is that others do too. It's 2008. Things shouldn't be like this; but they are. Things desperately need to change.

Monday, May 26, 2008

Ever since I was a little girl I've known that I needed to watch my weight. No one ever said anything to me--you just don't say that to a little kid--but doctors said it to my mom when I was in the room. They waited until I was a teen to say it straight to my face. If you have little kids, or if you work with little kids, then you know they pick up on more then you think. I've known I've needed to watch my weight since I was so little that I can't ever remember not having an intense fear of being fat lurking around in the back of my head.

Here's the logic:

People who have CP have a hard time walking. People who are overweight have a hard time walking. People who are overweight and have CP really have a hard time walking

Makes sense doesn't it?

Here's more logic:

The harder it is to move, the less you move.The less you move, the less calories you burn.The less calories you burn, the more weight you gain.The more weight you gain, the harder it is to move.

What it comes down to is this: MOVE and watch what you eat.

Doesn't everyone need to move and watch what they eat you say? Well yes--but it's worse when you have CP. Being fat can translate into virtual imprisonment. When it's hard to get around to begin with, making it even harder is sometimes too much to bare. In my mind (this probably isn't true) fat people with CP just sit home alone all day. Doing anything else just requires far too much effort. As a skinny person with CP, sometimes doing what I have to do in a day requires too much effort for me. I don't want to try it fat.

The fear of not being able to move is recent. Not the fear I had at 6 or 7 (maybe even as early as 4). It's just amazing how young you pick up on ableism. And a damn shame. When I was little I had this picture in my head of a faceless greasy woman sitting in a manual chair in the dark right next to the couch, watching TV alone. The woman was faceless because I didn't have a concept of how I'd look older, but it was me. It was me fat and alone and very depressed. No one would ever love me like that. Why would a man ever love someone that grotesque? FUCK ableism. Why would you do that to a little girl? Of course overweight people in wheelchairs aren't grotesque. I know that now.

Thankfully there was too much going on in my life to worry about what I put in my mouth on more then just an occasional basis. There was horseback riding and playing and even awful things like surgery and my 5th grade teacher. Even awful things canpush back fears. I always said I didn't need to worry about my weight until I was done growing. Thankfully I was reasonable.

As soon as I stopped growing though, I began the journey of becoming paralyzed with the fear of being fat. At first it was the fear of being ugly and alone. But thank god one day it dawned on me how crazy that was. I'm not exactly sure when that happened. It was a gradual process throughout high school in which I moved towards my new fear--my fear of loss of function. It was at this point that I really began to grasp why I needed to be concerned with my weight. I feel as though I'm a broken record on this blog. I didn't spend my entire childhood in hours and hours of therapy and in the hospital being sliced and diced not to walk.

The phrase "if you don't use it you lose it" applies so much more when you have CP. I've been depressed and laid in bed for weeks to the point that when I finally got out of bed I could barely stand up. It doesn't take long. Being fat would probably expedite the process.

I've weighed myself practically every day since I was 17. I'm 5'1.5" (the .5 matters). I prefer to be below 120lbs. Lately I've been hovering between 121/122. But I have more important things to deal with right now then counting points. I'm annoyed at that number all the same. It's ok though until I see 123 for more then a day or so. Then I know it's creeping. Creeping towards 130. 130 is that magic number I can never be. 130 would cause severe panic. I'd be fat. Well not really. Not until 135 according to a BMI calculator. But still...

The theme for the 39th DBC is "if I knew then..." Sometimes what you've known can be so much more damaging then what you didn't. I've thought about my weight every single day for the last 7 years. That isn't healthy.

Tuesday, May 20, 2008

I'm in the library, working on my Family Law & Public Policy final that is due in 9hrs. Almost done. Part of the final is on the book Secret Girl, by Mollly Bruce Jacobs. Since I just wrote a review I thought I would post it here too. Below is the back of the book in italics, and then my review. Has anyone read the book? Please comment if you have.

"For decades a well to do Baltimore family guarded a secret they felt too ashamed to reveal, much less speak of among themselves. For one daughter, the secret would haunt her for years but ultimately compel her to take surprising risks and reap unbelieveable rewards--the story of which forms the stunning narritive of this remarkable memoir.

"When Molly Bruce Jacobs, the family's eldest daughter, finds heself newly sober at the age of thirty-eight, she finally seeks out and comes face-to-face with this secret: Anne, a youger sister who was diagnosed at birth with hydrocephalus ('water on the brain') and mental retardation, was institutionalized. Anne has never been home to visit, and Molly Jacobs has never seen her. Full of trepidation, she goes to meet her sister for the first time. As the book unfolds and the sisters grow close, Jacobs learns of the decades of life not shared and gains surprising insight about herself, including why she drank for most of her adult life. In addition. she gradually comes to understand that her parents' reasons for placing Anne in a state institutionwere far more complex then she'd ever imagined."

I was disappointed in the book. It was introduced to me (I thought) as a book about a woman who grew up in Rosewood (an institution in Owings Mills, MD, very close to where I am sitting right now) that just happened to be written by her sister. Instead it was a book about Brucie, who just happens to have a sister who grew up in Rosewood. I didn't need to hear exstensively about the trip to Italy or dance class. I wanted to hear more about Anne. I think I would have liked the book better if it had focused more on the 10 years Anne and Brucie knew each other.

Also, I was disappointed with the way that Anne was portrayed throughout the book. Why were her childlike qualities emphasized? Anne was an adult. Refer to her as an adult. Yeah, she has her issues, but they can be illustrated differently. The tone of the entire book brings to mind the Tiny Tim view of disability. I take offense to it. Read No Pity, by Joseph Shapiro. Look at the part about Sotherbury Training School, about the court case to detirmine the appropriateness of a limited legal guardian. Read chapter 10, which is about Jimmy who spent 30 some years in an institution. Read about how he got out. All of these people have the same issues as Anne, but it is still very clear that they are adults. This is how it should be done.

Friday, May 16, 2008

I know that some of my friends really enjoy reading my blog, so I just wanted to give everyone a heads up. Monday night my computer crashed right in the middle of writing up a take home final. It won't turn on and if I try it just makes aweful noises. So now I am stuck in the library to redo that final. It's just AWEFUL timing. So my blog is being discontinued until such time that it is fixed. I'm anticipating that I'll have it working the beginning of June Hopefully I'm wrong. G-d forbid I have to get a new one...

My poor computer It has never been treated kindly by me. I have triped and fallen while carrying it. It has been close to the edge of my bed more than once and knocked off onto the floor while I attempted to get into bed. I think maybe it is fighting back. The poor thing has just had all it can take of my mistreatment. I guess that's just what it gets for being owned by a spaz. At least it lasted just 2mos short of 5 years. I guess that's somewhat impressive.

Friday, May 2, 2008

I recieve tremendous support from everyone I'm around on a daily basis. 8 out of the 10 full time professors in my dept have either extensively worked w/PWDs, done peer reviewed research about PWDs, and/or have at least 1 PWD in either their family of origin or procreation (even if it is something "nontraditional" like cancer). Chances are that the other 2 do too and I just don't know about it. When I need an accomodation, I get it, no questions asked. When I don't know what it is that I need, they are the ones who initiate figuring out what it might be. They're pretty good at it (even if I'd rather not listen to what it is they came up with).

All of my close friends are multiply disabled as I am, and are either finishing up their undergrad degrees, in their first year of grad school, or are in their first year working post-masters degree. Last night I had a conversation with one friend about our sensory stim needs and talked with another about voice intonation and some such thing. Sometimes I have conversations with friends about medications. A friend with CP decided to stop at target on her way home from work yesterday. She also decided to walk home from there. It's a 2 sec car ride but it took her 40mins on foot. It would probably take me 30mins. She had a heavy backpack with her in addition to what she went there to buy (was she crazy???). I know EXACTLY how she felt when she walked in the door. The only way you know what that kind of exhaustion feels like is to experiance it yourself. It's not something that can be explained. I surely can emphasize with her. I know exactly why she did it without ever having to ask. If it was me I would have done the exact same crazy thing in a heartbeat, knowing fully well just how crazy it was.

It's a wonderful feeling to be in an environment where everyone "gets" me. I say "gets" because no one gets me entirely. Yesterday was the 3rd annual Blogging Against Disablism Day hosted at Diary of a Goldfish. Stumbling upon last year's BADD inspired me to start this blog. Reading BADD posts lights a fire within me. It provides me with a level of comfort that I'm not sure I can clearly articulate in words. Sometimes I feel more connected to those in the blogsphere then anyone else. My friends and professors are not activists. Fighting the good fight is on a whole other plane then just having first hand experiance with/as a PWDs. I have such a strong driving force behind me, and knowing that so many of you do too is what brings me that comfort. I always know that I'm not alone, but it never hurts to have that reinforced.

The official BADD directory is long and very extensive. I hope to read through every post and comment here about my favorites, but it's the end of the semester, so that isn't going to happen anytime soon. What I thought I'd do is link other disaboomer's posts below so that they are all in one spot and don't get lost in the shuffle. If you're a disaboomer and posted on your offsite blog, please comment. I'd still like to link you.

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About Me

I'm 26 and am working part time as a Peer Support Specialist (psyc disability related) while I figure out what I'm doing with the rest of my life. I have cerebral palsy and bipolar II and I blog about my experiences with this because 1) I have a loud mouth and I like to use it 2) all the writing keeps me sane & 3) I value the community.
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